New figures give us a glimpse of the autism diagnosis crisis in England, suggesting that adults are on average waiting almost 25% longer for a first appointment than they were in 2014/15, according to the National Autistic Society.

The charity has analysed figures from a new report from Public Health England, which details the results of the latest (2016) local authority self-assessment exercise on implementation of the adult autism strategy. Each local area was asked to report the average wait in weeks between referral and first assessment in their area, which NICE guidance recommends should be no more than three months.

Key findings:

  • Overall, the autism diagnosis crisis appears to have deepened since the last self-assessment exercise in 2014/15. There are areas of good and bad practice, though there’s a huge variation across England – the longest average wait between being referred for a diagnosis and a first appointment was 125 weeks.
  • The average waiting time across all local areas is 16 weeks, which is almost a 25% increase from the figures reported in the last assessment from 2014/15.
  • One of the really important things in the Autism Act statutory guidance is that it says that getting a diagnosis should trigger a social care assessment. This is happening in 45% of local areas, down from 54% in 2014/15.
  • The report also includes some commentary. Some areas said that they had invested more money in their pathways, others said that increased demand meant they needed more investment. The report notes “The difference between the areas who had received more funds and those who stated they needed more money was reflected in the RAG ratings.”

What needs to change?

  • The National Autistic Society, autistic people and their families have been drawing attention to this crisis for many years, calling for waiting times to be regularly collected and monitored by the NHS in England. As a result, NHS Digital is currently developing a way to measure waiting times routinely – and this can’t come soon enough.
  • By monitoring waiting times, each area could be held to account and action taken to support them when waiting times are increasing, for instance by adding resource. But we need to make sure the Government funds these services appropriately, so they can meet the demands of the local population. This report clearly shows that those local areas who invested in their diagnosis pathway and services, saw a decrease in waiting times.

Mark Lever, Chief Executive of the National Autistic Society, said: “These figures give us a glimpse of the autism diagnosis crisis in England, suggesting that adults are on average waiting almost 25% longer for a first appointment than they were when the last assessment was carried out two years ago.

“There’s a striking variation between different areas across the country, with the longest average wait being 125 weeks. The average wait across all local areas is 16 weeks, which exceeds the three months recommended by NICE.

“Autistic adults and their families frequently tell us how life changing a diagnosis can be. It can explain years of feeling different and help unlock crucial advice and support, which can make a huge difference to an individual’s prospects. But these figures suggest that getting this support is a huge problem too. A diagnosis should trigger a social care assessment but this appears to be happening in just 45% of local areas, down from 54% in 2014.

“The National Autistic Society and thousands of autistic people and families have been drawing attention to the diagnosis crisis for many years, calling for waiting times for children and adults in every local area to be regularly collected and monitored by the NHS in England – rather than relying on self-reported surveys every couple of years – and for the Government to fund services appropriately.

“The good news is that the NHS has listened and is currently developing a way to measure waiting times routinely, but this needs to happen as soon as possible and then be used to actively monitor progress. This will mean that each area can be held to account in real time and action can be taken to support them when waiting times are increasing, for instance by Government investment. The evidence backs up this approach, with Public Health England’s report itself showing that those areas that invested in their diagnostic pathways also saw a decrease in their waiting times.

“Being autistic can be challenging at times but we’ve seen again and again the difference a diagnosis, understanding and support can make.”

More information about the National Autistic Society can be found at www.autism.org.uk.